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What’s Up WID: Disability Inclusion Transcripts

>> Ashley Inkumsah: Hello everyone and welcome back to What’s Up WID, the World Institute on Disability, biweekly podcast, where we discuss what’s up in the disability community, across the globe. I’m your host Ashley Inkumsah and I’m so excited for you to hear or watch or read the conversation I had with the one and only Debra Ruh earlier this week.

Ashley Inkumsah: Debra has been a global disability inclusion strategist for the past 20 years. She’s a market influencer and internationally recognized keynote speaker. She’s an author, branding expert and an entrepreneur. She also happens to be a board officer on WID’s board of directors. She is the CEO and founder of Ruh Global Impact. She’s also the host of an online program called Human Potential at Work.

Ashley Inkumsah: Now, Debra and I had quite the fruitful conversation about why businesses, corporations and governments need to prioritize disability inclusion. As I always say, grab yourself your favorite snack. My personal go-to snack is brie and crackers, perhaps with a glass of wine, but grab yourself whatever your snack of choice may be and sit back and relax and enjoy my wonderful conversation with the fabulous Debra Ruh.

Ashley Inkumsah: Well first let me just say, I think you’re doing some absolutely amazing work in the realm of disability inclusion and I’m so, so excited to speak with you today. My first question for all of our guests is always, how are you doing? How are you feeling today?

>> Debra Ruh: Well, thank you so much for having me on this show, on this podcast. I’m very excited that WID has a podcast now. I’m doing fine. My husband is walking a very difficult path with dementia, and we often talk about people with disabilities and that we could age into disabilities. And he’s one of those individuals where that is happened. So it’s… The word of the day I think for many of us is, wow, it’s intense. So let’s be kind to each other and let us be the way forward for each other. So, but thank you for asking. But Ashley, how are you doing?

>> Ashley Inkumsah: Well, thank you for asking me. First, I want to respond to how you’re doing. I always say that disability is one thing that can happen to everyone. Sometimes it might be hard for other people to relate to other people’s plights, but disability is the one thing that literally intersects every facet of our livelihood. So I totally feel you and understand you on that. And I feel like there’s always that pressure to say that you’re doing great, but I’m glad that you are genuine with how you were really feeling. And I really appreciate you sharing that with me.

>> Debra Ruh: I think we have to be right now, Ashley, because what I know is everybody that I’m talking to is traumatized and it’s not going to let up anytime soon. So we just have to I think take the time to be a little bit kinder and nicer with each other.

>> Ashley Inkumsah: Absolutely. I think mental health… I think that this past year has very revelatory as it relates to our mental health and our mental hygiene, just taking care of ourselves and not feeling like we have to be strong all the time. It’s been challenging. So it’s okay to say it has been and be honest, I think that’s where the healing starts.

>> Debra Ruh: I agree. Well said, well said.

>> Ashley Inkumsah: Yeah. And as far as how I’m doing I think I’ve been doing pretty good. Again, as good as we can be given our circumstances, I think that things are looking up and things are getting better, but I have been saying that we want to build forward better. We don’t want to go back to what we had before as it relates to the disability community for sure. We want to learn from the past year and move forward. So that’s kind of the head space that I’ve been in.

>> Debra Ruh: Right. I agree. And even though it’s so hard, it’s so hard. I don’t want us to go back to what we were doing, killing people with darker skin than mine in the streets. So I would rather walk this intensity and try to get it better, right for more individuals than go back and see the… whatever the way it was. We can’t go back anyway. But I think we just have to be deliberate about changing the world so that people can be more included and we stop deciding that people are throw away because they have a darker color skin or they love the wrong person, or they have a disability. It’s ridiculous what we do about… how we treat people.

>> Ashley Inkumsah: Absolutely. I think we’re certainly… we’ve grown. We’re much better than we have been in past years, but we have a ways to go. Again, It’s been a revelatory past year and it really has revealed that yeah, we have a ways to go as it relates to inclusion for sure. And that’s a great segue to my first question which is, how would you define inclusion for someone who is completely unaware of what disability inclusion is? How would you define what disability inclusion is?

>> Debra Ruh: Well, that’s a great question. And what disability… I think often people don’t know what we’re talking about when we’re talking about disability inclusion. And I know with the work I’ve been doing for a long time, people try to get me in a box and I’m just not going to be in a box. I’m not a square peg in a round hole, or I definitely am a square peg in a round hole, I guess I should say.

Debra Ruh: But if you really want to include people with disabilities then you do that. You include the community, you make sure things are accessible. You make sure that you are focused on inclusive design. You make sure that you are employing people with disabilities. And if they’re not disclosing they have disabilities, you as a corporation, you should really ask yourself why. So you make it safe for people to be able to self identify and talk about who they are and their lived experiences. You make sure that you focus on the intersections because it’s great to talk about disability inclusion, but if you’re not talking about disability inclusion from the lens of the intersections, which you mentioned, black women with disabilities, LGBT members with disabilities, women with disabilities. Looking at all of the many, many, many intersections. What about refugees with disabilities?

Debra Ruh: So I think you have to understand how broad the topic is, and then make sure that you understand we’re also talking about the digital divide and digital inclusion, because if you don’t have access to the internet and I was struggling with that recently. And if you don’t have access to good technology. So I think when people say disability inclusion, sometimes they forget that there’s a lot of moving parts. And that’s why it’s so important to work with DPOs or disability persons organizations like WID.

>> Ashley Inkumsah: Right? Yeah. I absolutely agree with you. And I’m so glad you brought up the intersectionality. In all social justice movements, I feel like there is no movement without including… Like in the Black Lives Matter movement, there’s no movement without including black women or black trans individuals. In every single movement that there is, we really have to include people who are multiply marginalized within that movement. So I really am appreciative that you brought up those intersections, for sure.

>> Debra Ruh: Yes. And I’ll make one comment and I’m probably not going to get some my numbers correct. But I believe that I’ll be able to make the point. When you look at gender issues, which I’m also very interested in because people will say that women are the largest minority group in the world, which by the way is not true. Women are a majority, there are more women in the world than men, but we’re treated like a minority group. So that’s it. So, and I believe in getting behind supporting the Black Lives Matter intersections, all of this, because we’re stronger together. When you look at… if you just look at it from a gender issue and there are major issues, so a man, and looking at this from the United States, I do a lot of work globally, but so you just look at $1.

Debra Ruh: So if a man is making a dollar, then I, as a Caucasian white woman, I make about 70 cents on that dollar. Ooh, that’s bad. But when you start looking at my sisters in the other groups, my sisters, that… My black sisters. Well, they make like 50 cents on the dollar. And then you start looking and you just go down and it’s the Latinos with disabilities. But you start getting to women with disabilities and it’s ridiculous. On the average, it’s like 20 cents on the dollar. So as you move through our gender intersections, it gets worse for you if you… And I don’t even understand why we decided that somebody with lighter color skin is better than somebody with darker color skin. But as you said earlier on, there’s a lot of things we need to correct in society. And these are just a few, but if it’s looking at it from that gender, you can see the disparities get worse and worse and worse and worse.

>> Ashley Inkumsah: I think ableism and sexism and misogyny and racism, they’ve just had extremely robust marketing campaigns where it’s literally infected literally every facet of society, whether it’s implicit or explicit, it’s 100% infected every facet of our society.

>> Debra Ruh: Oh, well said. And it’s amazing sometimes now that we are actually digging into it, it just is amazing. I always knew there were problems with housing and problems with that. But I had no idea how bad it was for other people. I just had no idea. And one time Ashley, I have a large social media presence, and one day something was trending on Twitter and it was white privilege. And I thought, “Go in…. Don’t go in there Debora, don’t. And I thought, “No, I have to go in.” And so I looked stupid at comments that people were making, “Oh, what do I do with my white privileges? I got out of getting a ticket.” Okay. Whatever.

Debra Ruh: It’s some stupid comments, but I went in and I said, “Well, what I’m doing with my white privilege is I’m making sure the door is wide open and I’m bracing it open. And I’m saying, come on in, because we all have privilege being born in a developed country. That we all are privileged if you’re living in the United States, but what are you doing with that privilege to help others that aren’t privileged?” And that ,I think, that’s the opportunity that we all have.

>> Ashley Inkumsah: Yeah. That’s the age old question. What are we doing with our privilege? And I think allyship is really important, especially within the disability community. We need people who are non-disabled, who are allies, unfortunately, because people who are non-disabled… Our privilege that allyship to stand or roll or sit beside one another. For sure. Absolutely.

Debra Ruh: I agree. I agree.

>> Ashley Inkumsah: How, and when did you get involved in the disability inclusion space?

>> Debra Ruh: Great question. I believe that I got involved 34 years ago when my daughter was born with Down syndrome because I remember right after I gave birth to her, looking at her. And by the way, thinking that she was the most beautiful baby ever born, which I still agree with, but I had this quiet little thought flipped through my mind that said this, she looks like she has Down syndrome. And I remember thinking, what does that even mean? I had never met anybody with Down syndrome. I’d seen the kids going in the special classes, but I ignored that thought. And four months later the doctors diagnosed her with Down syndrome, but I believe that’s when I joined the community. What I didn’t know was I was already part of the community with my ADHD and anxiety. I just didn’t know anything about it.

Debra Ruh: I didn’t think at the time I’d met anybody with a disability, which so many people are like that. What I realized as I moved into the field, really aggressively into the field was I was surrounded by imperfect humans. And by the way, I wanted to be around imperfect humans because who’s perfect? Nobody’s perfect. And so, but I was in the banking industry and I was at an executive level in the banking industry. And I was trying to help, I was actually employing people with disabilities because we had programs to do that. But when my daughter reached middle school in, it would have been about 1998 or something like that. But I just was so surprised how there was no plans for her joining the workforce at all. And I thought, “But wait a minute, she can contribute.” So, that’s when I got very involved. That’s when I decided to quit my well-paid banking position and create access where I committed to employing people with disabilities.

Debra Ruh: I also did not… And we were a technology company focused on accessibility, but I didn’t want to be a, for a nonprofit. I wanted to prove I could be a for-profit and stand toe to toe with other people that weren’t employing people with disabilities. We now would call that a social enterprise. So I did that around 2000, but I would say that I joined the community in 1986 when my precious daughter was born.

>> Ashley Inkumsah: Amazing. It’s amazing how our lived experiences go on to color what we end up dedicating our lives to. That is wonderful.

>> Debra Ruh: I just always thought I was here for a reason. And so when my daughter was born, when they told me she had Down syndrome, I thought, “Okay, all right. I want to help.” And yeah. And then my son was born 15 months later and I realized, okay, I also have to navigate two children, but I think you’re right. Our lived experiences can help us navigate where we’re going.

>> Ashley Inkumsah: Absolutely. What kinds of challenges have you seen when it comes to corporations, working with corporations as they try to incorporate disability inclusion initiatives within their organizations?

>> Debra Ruh: Well, I would say that the problems have shifted, but early on, they just did not understand what we were talking about. So we spent a lot of time talking about the business of including people with disabilities, employees with disabilities. And so, but now what I see happening, and also we were seeing a lot, and this was happening mainly in the states, but we saw a lot of… I’m just going to focus on accessibility because I don’t want to get sued. And so I saw them and I don’t blame them. Sometimes when you look at a problem, you’ve got to see where your risks are and you’ve got to address that first.

Debra Ruh:n But I think what I continue to see is corporations just don’t understand the moving parts. They don’t understand that if you don’t make your systems accessible, that we can’t even apply for your jobs, they don’t understand what would you… When we’re talking about disabilities that about 80% of the disability population have invisible or hidden disabilities. And you don’t even know for sure if they’re a person with disability and they don’t know how to encourage us to self-disclose because I’m a person with hidden disabilities. I’m very vocal about it. I’m a person with ADHD and severe depression and anxiety, which this intensity right now is not helping, but oh well, but so the corporations don’t understand. They don’t understand the complexity of inclusion, of disability inclusion. And then also they’re confused because they’re having diversity and inclusion conversations in other ways like with our Black Lives Matter or with LGBT or women and gender, or Asian Americans, Latin Americans, but they don’t understand the intersections.

Debra Ruh: And often diversity groups don’t understand the intersections. Some of them are starting to, but I remember years ,this was about three, four years ago. So a long time ago, I was at a SHRM conference, the Society of Human Resource Management, which is really trying to help us. And there was a diversity and inclusion and they were saying, “So what is part of diversity inclusion?” And I just sat and I waited. I wanted to see how long we were going to go be before our community was included. And it got to 15 categories and still nobody had mentioned. And so I raised my hand and they’re like, ” Oh yeah, yeah.” But that’s what we see as we, the disability community is often not even being included in the diversity inclusion conversations.

>> Ashley Inkumsah: It’s so true. I feel like we are having more and more conversations about race and about gender disparities. But for some reason it feels like the disability conversation has been, I don’t know, somehow left on the sidelines and the social justice movement hasn’t caught up to it yet.

>> Debra Ruh: Yes. Agree, agree. And you know, I love the term social justice and that’s what we use as well. And you look at things like we’re talking about, you start digging into the problems and you’re just stunned. But if you look at our prison systems where we are totally warehousing a lot of brown and black people, but 65% of prison inmates have disabilities, why would we do that? First of all, why would we put people in jail because of the color of their skin, which that is happening, that is totally happening. But at the same time, how can we not have the empathy that these people are in trouble? And we’re going to jail them? Anyway, things like that.

Debra Ruh: I won’t get caught up in that drama. I don’t understand how we can say we’re a humane society and then do what we’re doing in the States and our prison systems. But yeah,

>> Ashley Inkumsah: A whole other can of worms for sure.

Debra Ruh: That’s right. That’s right. I’ll be careful to stay on track.

>> Ashley Inkumsah: So how have you helped corporations to overcome these challenges that they face?

>> Debra Ruh: Well, I’ve been working on helping corporations include people with disabilities since the early two thousands. And how I started helping was with accessibility. I really believe in accessibility, all technology needs to be accessible. The buildings need to be accessible. And then I started really focusing on this from a global perspective. It’s like, okay, but it’s great that you’re including people with disabilities in the United States or in the United Kingdom, or maybe in Australia, but you need to do it… corporation, in all of your geo footprint.

Debra Ruh: So why aren’t you doing in Bangladesh? Why aren’t you doing it in Poland? Why are… And so sometimes I feel like I’m just being the nag of the industry. I’m the mother nag going, “Come on, everybody’s got to be included. Come on.”

>> Ashley Inkumsah: We need the disruption.

>> Debra Ruh: We do need the disruption. But what I have done, which is relatively new over, it’s been about four months now, is I decided to create a global nonprofit called Billion Strong, very proud that WID of course, has joined this effort being a global advisor. But I… And I’m saying, I, and then I’m going to switch to we because you can’t do anything with an I, but I really wanted… I was seeing things like the Valuable 500 happening. 500 CEOs committing to include us. And I thought, “Well, wait a minute. If our community doesn’t come out and self identify in a way then they’re not going to be able to find us.”

Debra Ruh: So could we create an identity organization, once again, being very mindful and deliberate about including the intersections of those identity organizations, like the LGBTs, the Black Lives Matter and others, but also do it from a global perspective because solving it in the U.S. is great, but we’ve got to solve it in the world. And so I’ve been able to pull in so far 58 countries, hundreds of advisors, but at the same time I’m going to make another point. It’s also very, very important to be very deliberate right now, because as I said, Ashley, I am a person with disabilities but you wouldn’t know it by looking at me if you could see. Now, I’m also a mother that has a grown daughter that was born with Down syndrome. I’m also a wife that has a husband that has aged into dementia, which is sad, I’m so many different things, right?

Debra Ruh: But what I decided to do with this organization, we created Billion Strong, which is was not be the CEO of the organization. Instead I selected, and with my team, we selected Dr. LaMondre Pough to be the CEO. And the reason why is because he has lived experiences as a black American. So he’s, African-American, he also has lived experience growing up in the south of the United States, which is the states that fought to not free the slaves and still there’s a lot of… there’s prejudices everywhere, but it’s a little bit worse I perceive sometimes in the part of the country that I was born. He also is a man with lived experiences with disabilities. He was born with muscular dystrophy and his mother was told to institutionalize him. His mother was told he wouldn’t live past five.

Debra Ruh: Well, he just celebrated his birthday. I think he’s 47. He’s got this-

>> Ashley Inkumsah: Sounds amazing.

>> Debra Ruh: Yes he’s an amazing leader too. He’s such an amazing leader, but he has not only lived experiences with disabilities. He’s a wheelchair user. He has limited use of his upper and lower body. But let me tell you what he is. He’s an amazing, talented man that is going to change the world. And all of us are going to get behind him and support him. But representation right now matters more than ever before. If you have a chance to hire somebody and you have three qualified candidates, and one of them is a black woman with disabilities, you should select the black woman with disabilities. Let’s just be more deliberate about including the disenfranchised people, because we’re not going to get past this if we’re not more deliberate about inclusion right now.

Debra Ruh: It’s not that I don’t want white people included, of course I do. But we’ve disenfranchised people of color too long. People that are brown and black, people with disabilities. Yeah. LGBT community. So it… right now, representation and intersections also matter. And I know you agree with that, Ashley.

>> Ashley Inkumsah: Yes, absolutely. I think we often get into this conversation about identity politics, this term about identity politics. And are you including this person because they’re, so-called qualified or not qualified, or just because of the identity that they are personalized or ascribed to. And I think it’s really important what you said that people of color, people with disabilities have historically not been given a platform, not been given opportunities to be employed, to have an education, to exist. And so many sectors of our country and really of our whole entire world. So, it’s really important to actively and intentionally want to include them in the conversation.

>> Debra Ruh: Yes, yes. And another thing that I saw happening, Ashley, which was bothering me, I love that the corporations are starting to employ people with disabilities. I love it. But I started noticing, especially during the pandemic, I had quite a few younger people, now I’m in my sixties, but younger people. So I started seeing a trend. I had about 15 different ones, all separate that… most of them were women. Most of them, except one had lived experience with disabilities. A lot of them were part of the intersectionalities. They all worked for major multinational corporations. But what they all were also saying was that they got hired, but then they sort of got stuck. They weren’t being promoted. They weren’t getting professional development and that feels a little bit like tokenism.

>> Ashley Inkumsah: Exactly.

>> Debra Ruh: So it’s like, “Hmm, did you hire me? Because…” Right? And so that’s another reason why we created Billion Strong. I mean, I still have Ruh Global Impact and we are a corporate. We help corporations all over the world, understand the nuances of this, but I really, really felt that we needed to have a global identity organization.

>> Ashley Inkumsah: Why do you think it is that disability inclusion tends to be so lacking in society and corporations and marketing endeavors of corporations? Why do you think that is?

>> Debra Ruh: Well, I think a lot of the reason is because the community itself has not identified. We don’t… I think we could learn so much from the LGBT community, for example, that they took all their different parts. They’re still doing it and come together. You know, I… we can learn a lot from the LGBT community. It’s really LGBTQIA plus because they’re figuring out their identity.

>> Debra Ruh: And they have been told by society and by religious doctrine that they’re broken and that they’re… But they came together with pride and we have not done that at the disability community level. We haven’t. I think we need to come together with pride and say, “I’m proud to be a Caucasian woman, a white woman with lived experiences with disabilities. I’m proud of my lived experience.” And we also need to say Ashley, that having a disability doesn’t make us broken. It actually can make us very sexy. So how can we change the dynamics? Because right now, when a child… when my daughter was born with Down syndrome, people didn’t congratulate me on having my beautiful baby girl. People were feeling sorry for me. So it’s not a tragedy to be… have a disability society is the one that makes it a tragedy.

>> Ashley Inkumsah: Absolutely. I was just saying on our last episode, how people with disabilities have to do so much to fit into a world that was not built for them when it should be the other way around. And it’s actually the same. And I’m really into the body acceptance movement and like anti diet culture movement. And it’s the same way that women, we, as women are often trying to fit ourselves into a size two dress, whereas designers should be making clothing that fits all of our different, beautiful bodies. You know? So it’s the same thing with the disability community.

>> Debra Ruh: And once again, it’s human beings telling to other human beings they’re not good enough. You’re not pretty enough. It’s ridiculous. We have got to stop discounting people. We have to stop it.

>> Ashley Inkumsah: Absolutely. We have to do better as a society, for sure. Why do you think that governments and corporations and society as a whole… why is it so important that that people with disabilities are included in their planning and overall business practices?

>> Debra Ruh: Well, in the first place, if you want to hire young people, period, you better do it because the younger generations are not going to put up with this anymore. The younger generations have out, we won’t work for you. Thank goodness for the younger generations.

>> Ashley Inkumsah: Absolutely, the Gen Z kids are really the… they are the best that there’s ever been. I’ve been saying I’m kind of jealous of that myself.

>> Debra Ruh: Whoa. And they’re saying, “We won’t work for you. We won’t buy from you. And if we are working for you, we will walk out on you if you are not including us.” And so if you want to be an employer of choice, you better be paying attention in hiring people with disabilities and other diverse groups. So some governments and corporations, they don’t realize society has changed. Some older generations don’t realize it, but it has.

Debra Ruh: And the younger people are not going to put up with it. So you want to be considered a leader, stop stealing our data, stop being inappropriate, stop making money. Everything that you’re focused on, make sure that you’re looking at… We want you to make money, but you also need to do social good. And you need to have a diverse workforce that includes people with disabilities and we are watching. And so I think the number one thing that’s going to change everything are the young people. They’re not going to put up with it anymore.

>> Ashley Inkumsah: Thank you. Thank you. Absolutely. Those Gen Z kids are going to give them a run for their money. That is for sure. And it’s amazing. I love to see it. What lessons would you say that you’ve learned along the way that you can share with other businesses and NGOs and corporations that might be still on the fence as to whether or not to include people with disabilities and disability inclusion as a whole?

>> Debra Ruh: Well, once again, you have no choice. You have to include people with disabilities. And by the way, if you don’t, we’re going to continue to talk about your brand and the community is going to… Once again, we’re getting together, like with Billion Strong. We already have strong leadership groups like WID and National Organization on Disability and the Valuable 500. But when you get this identity organization together and then others will join. If you don’t include us, we’re going to talk about it. So I mean, society is going to have to take a stand and we’re going to have to take a stand together, all of us together saying, “By the way, it is not okay that you’re not including brown and black. It’s not okay that you’re not including more LGBT. It is not okay you’re not including women in meaningful ways and it’s not okay.”

Debra Ruh: So the corporations, by the way, do know this is happening. And so did the governments, but they don’t completely know how to proceed. So I think we still have a lot of work to do to make sure they know. For example, something that WID does is they have a great program to help make sure that conferences are fully accessible. So you have to think about that. Yeah. There’s a lot of moving parts, but these corporations, these governments need to be deliberate about working with organizations like the World Institute on Disability because they represent our community and we’re paying attention. We’re paying… And there’s a lot of ways to mess up. But if you’re working with an organization like WID we’ll make sure or Billion Strong or all of us, because there’s so many different moving parts, we will protect you.

Debra Ruh: We’ll help you be successful with this. But if you’re not including us, you can expect the lawsuits to continue. You can expect us to be talking about your brand in negative ways in social media. I’m talking overall. Not me personally. I tried to be real nice with social media.

>> Ashley Inkumsah: Yes, absolutely. Well, like I said, it’s been an awesome, very fruitful conversation for sure. Where can our audience find you? Where can they keep up with all of the amazing work that you’re doing?

>> Debra Ruh: Thank you, Ashley. I’m very visible on social media. And most of my handles are my name, Debra Ruh, D-E-B-R-A R-U-H. I’m on Twitter and Instagram and Twitch and LinkedIn and YouTube. I’m on all of the channels, but also my website is And that’s… we have a little think tank consulting group, and then Billion Strong is And we just started so there’s not a lot of content on the website because we want the community to help us, but we are proud that WID is a partner of Billion Strong, and I think you’re a great interviewer too Ash. And I do want to bring that in here.

>> Ashley Inkumsah: Thank you. I appreciate it. Well, I actually have one more question actually. My last question for you is what is one piece of advice that you would give and offer to businesses? What’s one piece of advice you would offer as it relates to disability inclusion?

>> Debra Ruh: Well, I think the one piece of advice I would use is make sure that if you have employee resource groups, that you have one for people with disabilities, and if you have other groups see how you can pull those groups together to support each other and support you as a brand. And once again, understand society has changed. And those younger people that are so talented that you’re seeking, they don’t want to work for you if you’re not showing leadership in diversity and inclusion and accessibility. And if you don’t believe that, just go out on social media and they will tell you that. So I would think the one thing that I would recommend is to pay attention to what is happening in society, because it has changed and is going to continue to change.

>> Ashley Inkumsah: Absolutely. I couldn’t have said it any better.

>> Debra Ruh: I’m teaching the world Ashley.

>> Ashley Inkumsah: Yes you are.

>> Ashley Inkumsah: Well, like I said, I mean, this has been an amazing, awesome fruitful conversation. So much to think about, so much actionable things that we need to get out there in our community and really start to create and move the needle forward in disability inclusion for sure. So it’s been a pleasure. It really has been.

>> Debra Ruh: I feel the same way, Ashley, thank you so much.

>> Ashley Inkumsah: What an absolutely great conversation. I mean, I really just had so much fun chatting about why businesses and corporations and governments really need to commit to including employing and advocating for people with disabilities with Debra.

Ashley Inkumsah: It really was awesome to speak with someone who has the shared mission of operationalizing inclusion. Debra is truly so, so incredible. Thank you so, so much for tuning into today’s episode. You can find transcripts and American sign language interpretations for today’s episode and all of our past episodes on our website at And as always, our famous last words here on What’s Up WID, to paraphrase one of our directors here, Nicholas Love, and one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you so, so much once again, and I’ll talk to you next time.

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What’s Up WID: Institutionalization of People with Disabilities

>> Nicholas Love (Host):
Hello, everyone, and welcome to the debut episode of What’s Up WID, the World Institute on Disability’s biweekly podcast, where we’ll be discussing what’s up in the disability community across the globe. My name is Nicholas Love and I’m honored to be a director at WID and I will be your host for What’s Up WID. Our first guest is none other than WID CEO and executive director, Marcie Roth. Following the 9/11 terrorist attacks, Marcie worked to improve emergency preparation and disaster outcomes for people disabilities and build assessable disaster-resilient communities.

>> Nicholas Love (Host):
Marcie was then appointed by President Obama to the United States Department of Homeland Security, Federal Emergency Management Agency, also known as FEMA. There, she served as a senior advisor to the administrator from 2009 to 2017. She also established and directed the Office of Disability Integration and Coordination. Both at FEMA and after launching the Partnership for Inclusive Disaster Strategies, she led national and global transformation towards disability-inclusive emergency management, disaster risk reduction, and community resilience. She became WID CEO and executive director in 2019 where we are very blessed to have her, where she is bringing her lifelong commitment to advancing the rights of people with disabilities and expanding disability leadership locally, nationally, and globally.

>> Nicholas Love (Host):
Today’s topic with Marcie will be institutionalization. We’ll be talking about nursing homes and congregated settings for people with disabilities. Welcome, Marcie, and how are you doing today?

>> Marcie Roth (Guest):
Well, thank you very much, Nicholas. I’m doing just fine. Thank you very much. As we continue to address this very challenging failure of systems to do what is necessary for everyone to have an opportunity to live in our community, this is a really important topic to me. I’m glad to be here and glad to be talking about this with you.

>> Nicholas Love (Host):
Wonderful. We’re so glad to have you as well. Marcie, tell us about congregated facilities and the institutionalization of people with disabilities in the US and globally.

>> Marcie Roth (Guest):
So, many people think that this is a small and insignificant matter. The use of congregate facilities to house people with disabilities is something that has gone on unfortunately for centuries. It has never been a good place for people with disabilities to be, and for many, many years, decades, there have been efforts to replace the institutionalization of people with disabilities with community services, the kinds of supports and services that enable people with disabilities to live independently, to make choices. And yet despite all these best efforts, in the US, there are about two million people with disabilities living in long-term facilities also known as institutions.

>> Marcie Roth (Guest):
And many of these, but not all of them, are nursing homes or what are known as skilled nursing facilities. Among those two million, we’re also talking about group homes and places where people who require mental health supports are held in facilities. Then there is an additional two million people, many of whom have disabilities, who live in carceral facilities; jails, detention facilities, and other places where people are incarcerated. So, this is again not an insignificant number of people although the very humanity of these people is often treated as though it is insignificant.

>> Marcie Roth (Guest):
Globally, the institutionalization of people with disabilities is a huge number. And this includes children, babies, children, as well as older people. And just as it is in new US, in some cultures, it is far less common that people are served outside of their family home. But even in places where it’s assumed that people are not living in congregate facilities, in fact, if you really drill down, even in those places, many people with disabilities are in fact in these facilities. And the conditions, whether it’s in a developed country or a less developed country, the conditions are awful.

>> Marcie Roth (Guest):
If we weren’t already quite clear just how bad congregate living is for disabled people and for disabled people in emergencies and disasters, the last period in which COVID has taken its toll, it is more clear than ever just how bad these facilities, these institutions are for disabled people and particularly disabled people of color and other multiply marginalized people, people who are black, brown, people who are indigenous, as well as people who are LGBTQ, as well as people who have experienced extreme poverty, women much more so than men. And the facts in all of this together paint a picture of a kind of discrimination and segregation and devaluing of humanity that has been ignored for far too long.

>> Nicholas Love (Host):
Sobering, very sobering that so many people do not understand how big of an impact this has. So, during a disaster, after disaster, what’s happening in these institutionalizations and this congregate settings? Talk to me about what happens during those time periods.

>> Marcie Roth (Guest):
Well, so there are a number of really troubling issues. I’ll talk about a couple of them. One in particular is that although here in the US we have a number of laws… I think we’ll talk more about those later. But we have a number of laws that should be protecting people in disasters from institutionalization, and yet the numbers of people who are moved into nursing facilities and other long-term care facilities during disasters is actually especially disturbing. It is not uncommon that someone could be taken from their home and bypassing an acute care facility, not being provided with support in an emergency shelter setting where other members of the community might be, but may be taken directly from their home and admitted to a nursing home, for example.

>> Marcie Roth (Guest):
And this is often because there is this perception that people cannot get their needs met in a disaster in any environment other than a medical environment. This is a medical model way of thinking about disability. So if someone needs personal assistance services, if they need an accessible bathroom, if they need a place to plug in their disability-related equipment or medical devices, if their medications or disability supplies are damaged or destroyed in the disaster, all of these, rather than the planning that it takes for the community to prepare for the whole community in a disaster, it is assumed in many places that there is no other place that can meet people’s needs and so they are directed straight from home or from an emergency room or from a hospital bed into a long-term care facility.

>> Marcie Roth (Guest):
When you couple this with a number of things that happen in disasters that provide flexibilities, that are… There are flexibilities in disasters that the federal government confers to the states that very significantly cross the line when it comes to the rights, the civil rights of people with disabilities, and yet this happens again and again and again. There are unfortunately far too many examples over the period of the pandemic in which this sort of use of the federal government’s waiving certain obligations, despite the fact that there should be no waivers in disasters, there are no waivers in disasters, huge numbers of people have been institutionalized, whether it’s directly because of COVID or whether it’s been because of a co-occurring disaster, a hurricane, a flood, a tornado, a wildfire.

>> Marcie Roth (Guest):
There’ve been a number of concurrent disasters over the past year and the institutionalization of disaster-impacted people with disabilities has been higher. And after the disaster, once people have been admitted to these long-term facilities, oftentimes, whether they get lost in the system as a primary problem or whether what happens is that person’s home and community-based services are disrupted, the supports that they need have been damaged, the people who might provide those supports are no longer available, their home may have been damaged and accessible housing is particularly difficult at all times, even more so in a disaster, their employment and their ability to maintain their livelihood, all of these are disrupted, the person is in a facility and they are never again moved back into the community that they were pulled out of in the middle of the disaster.

>> Nicholas Love (Host):
So it’s like an individual is pulled into these institutions and is kind of trapped. You mentioned a whole community approach to preparation, so what should be happening during disaster to make sure that we don’t lose these people into an institutional setting.

>> Marcie Roth (Guest):
So, the process of whole community planning is one that is far less complicated than many people think it to be. One of the most key pivotal elements of it is Nothing About Us Without US, including people with disabilities at every step of the way in planning for, throughout responding, in recovery, and in mitigating what might happen so that the whole community builds a kind of resilience that benefits not just some members of the community, but in fact the whole community. So whether it’s in that community planning and the exercises that communities hold in the US and in many places around the world, there are emergency exercises that are conducted on a regular basis.

>> Marcie Roth (Guest):
And these are great opportunities for disabled people to participate and for us to be able to pose real world challenges in a sort of no-fault environment. And yet, unfortunately, in that planning, so often, rather than including people with disabilities, they use stuffed animals or they have people, actors, pretend that they’re people with disabilities. They’ll hang a tag around people’s necks that says, “I am deaf.” But these are not adequate solutions to the planning and exercising process because you need real people with lived experience posing those challenges.

>> Marcie Roth (Guest):
Exercises are an ideal opportunity to break things. Exercises are not intended for us to prove just how great everything is. When we were kids and we were participating in fire drills in school and they timed everybody and how fast can we get everybody out of the building, we didn’t inject the real world challenges that might actually teach us in a no-fault environment how to protect the whole community in that setting. So in the planning, we need to be looking at the entire process, the alerts and warnings, building evacuation, multi-story buildings, how people get from one place to another, from a building to a place of safety. What happens when people with disabilities have acute medical needs?

>> Marcie Roth (Guest):
Most of us most of the time don’t have cute medical needs, but when we do, we still need accommodations just the same as when we’re not in the middle of a disaster. So planning for meeting those accommodations as well, and then throughout the entire disaster cycle, to make sure that in that planning that we’re thinking through all aspects of the built environment, all aspects of emergency and disaster programs and services, and the imperative for equally effective communication access. Information has to be accessible, to be actionable.

>> Marcie Roth (Guest):
In a disaster, we want to be sure that everybody has the information that they need in a way that they most need to receive it so that they can take personal protective measures, so that they can help their family, their neighborhood, their community. When everybody has the information that they need, the whole community benefits from that. So, those are some of the things that should be happening. In some places they are happening, or at least they’re starting to happen, but in far too many places, they’re not happening at all.

>> Nicholas Love (Host):
I mean, it sounds so simple; inclusion, communication, preparation. It seems like a simple process. You talked a lot about it, so how has the COVID pandemic exasperated the situation in the form of people with disabilities in congregate facilities, in the non-stop admission to these facilities, and the denial of the relocation when people request it?

>> Marcie Roth (Guest):
Let me begin by saying that when we’re talking about most facilities, over the period of the pandemic, there has been so much focus on what is reported as the disproportionate death of older people, the disproportionate death of “the vulnerable, the fragile, the frail, the elderly”, which are all just offensive descriptors to begin with. But these are virtually all people with disabilities. You don’t go to a nursing home because you’re old, you go to a nursing home because you have a disability and your community has failed to plan to accommodate you and your disability.

>> Marcie Roth (Guest):
Many, many older people live at home and in their community for their entire lives, so institutions are not an inevitable part of the aging process. Institutions are what happens when the community fails to adequately meet everybody’s physical, communication, and program accessibility needs. So, since the beginning of the pandemic, a longstanding problem of infection control in congregate settings became even more deadly. So we’ve had now close to 200,000 people who’ve died in nursing homes and other long-term care facilities. Virtually all of them are people with disabilities.

>> Marcie Roth (Guest):
And the failure to provide the supports and services that these individuals should have been entitled to in the most integrated setting appropriate to their needs, which should have been a non-congregate setting, instead, most people were denied the opportunity to be in a safer environment. We all know that COVID-19 has been an absolutely horrific pandemic. It’s been absolutely horrible. But the number of black and brown and indigenous people with disabilities who have died and even more so the numbers of people of color who have died in nursing homes has been… I have to use the term genocide.

>> Marcie Roth (Guest):
People with disabilities, especially multiply marginalized people with disabilities have died in such shockingly high numbers that I don’t think there is another term that could more appropriately be used to describe the genocide of hundreds of thousands of people, hundreds of thousands of our siblings in the US. This is true globally. And based on the Centers for Disease Control and Prevention and their numbers, they have talked about 94% of the population who’ve died from COVID, not just people in congregate facilities, but 94% of the people who’ve died from COVID had pre-existing conditions, and I’m making air quotes as I say this, have had comorbidities, and more air quotes.

>> Marcie Roth (Guest):
These are words, these are euphemisms that are used instead of disability. But if 94% of the deaths from COVID here in the US, going on 600,000 people, 200,000 of them in institutions, 600,000 of them altogether, we’re talking about 94% of these people had underlying conditions. These were people thus with disabilities and these were people who had rights, and in at least far too many cases were denied their basic human rights, civil rights, to receive the services and supports that they needed to keep them safe and to protect them from COVID-19. To take that one step farther then, that unbelievable loss of life in these facilities… Well, let me back up for a minute.

>> Marcie Roth (Guest):
I talked earlier about how there are not supposed to be waivers of federal civil rights protections in disasters, in public health emergencies, and declared disasters. Despite the fact that there are not any waivers to those protections and despite the fact that the Americans with disabilities Act and the Olmstead decision that came from the Supreme Court as a result of the challenge to the Americans with Disabilities Act, there have been waivers that have allowed people to be moved from hospital beds into long-term care beds, not because there was a need for that individual to receive services in that long-term care bed, but because the hospitals needed the acute care beds.

>> Marcie Roth (Guest)
So while we’ve heard a lot of talk about alternate care settings, most of these alternate care settings were wings of nursing homes or congregate care facilities, long-term care facilities that were repurposed to move people out of acute care beds to make room for people who needed those acute care beds. As a result of the fact that people are allowed by the federal government despite those protections to be moved into these facilities, and added to that the extreme loss of life in those facilities made for a really lethal combination because those nursing home beds when left empty are financially a problem for the owners of those facilities.

>> Marcie Roth (Guest):
And many of those facilities are for-profit companies and leaving those beds empty is perceived by them to be an unacceptable status. So rather than focusing on safety as the absolute, hard stop, number one priority, there are many examples of where the priority was in filling those beds. During the pandemic, people with COVID and people who need a rehabilitation bed, not even because of COVID, those are very lucrative. Medicare and Medicaid pays way better for those folks than they do for long-term poverty rates for people with disabilities. So what then came as a result of this is that you had many, many people, either those who had COVID and were moved out of the acute care beds and into these long-term facility beds bringing COVID into the facility despite all the assurances that, no, they were being kept separate.

>> Marcie Roth (Guest):
That has not been the case. Or people who were being admitted to the long-term care facility who didn’t have COVID, who came from home, went to the hospital for some other reason, and were then transferred for post-hip replacement to these facilities and they were then admitted to a facility where COVID was rampant. As a result, even now with the successful vaccination of so many people in long-term care facilities, despite all of that, less than 50% of staff in those facilities have opted to be vaccinated, which means that those folks who were fortunate enough not to get sick before are now still at risk of getting COVID.

>> Marcie Roth (Guest):
The vaccine does not prevent COVID, it simply prevents the disproportionate impact of COVID, which is still not going to be… We all have high hopes that the impact of COVID for people who’ve been vaccinated will be less, there’ll be less hospitalization, less death. I have yet to hear anyone say that there won’t be any impact from COVID. And so again, people with disabilities are being discarded, erased, our lives are being so devalued by this constant churn. I’ve heard that over 100,000 people have been admitted to these facilities since the 1st of January. 100,000 people. It is extremely troubling.

>> Marcie Roth (Guest):
Combined with that is the very unfortunate circumstances that efforts have been made across the country, WID has been very involved in attempting to use the federal funding that is available through the Federal Emergency Management Agency, their public assistance category B, Emergency Protective Measures funding, to enable independent living centers and other disability-led organizations to assist people with disabilities who want to leave those congregate facilities. Those FEMA and the states have not allowed the use of those funds for this purpose. In Philadelphia, there were 20 people who had wanted to be a part of the transition out of those facilities and into a non-congregate setting earlier this year.

>> Marcie Roth (Guest):
While folks were arguing over whether or not those federal funds could be used for this purpose, all 20 of those people died from COVID. It is again a genocide of people with disabilities. And to this day, as we meet for this podcast, there is still no resolution in the use of those federal funds, which are being used for non-congregate housing for other people. They are not allowing for the use of these funds for people in congregate facilities because people are not considered to be “experiencing homelessness” if they’re in a facility, even this sort of facility. So, sure you have more questions.

>> Nicholas Love (Host):
You talked about the ADA and Olmstead. Can you share a little bit about how are these laws there to protect people with disabilities?

>> Marcie Roth (Guest):
The Americans with Disabilities Act and the challenge to the Americans with Disabilities Act that resulted in the Olmstead decision very clearly say that people with disabilities have a right to be served in the most integrated setting appropriate to their needs. The Department of Justice has gone on and very clearly stated that in almost every situation in a disaster, as well as not in a disaster, but in a disaster, a nursing home should never be the assumed solution. In fact, the Department of Justice back in 2007 in their ADA toolkit talked about the fact that it almost never should someone be sent to a nursing home rather than serving them in the community in utilizing the same disaster services that everybody else should be able to benefit from.

>> Marcie Roth (Guest):
The Rehab Act is now almost 50 years old and that law which… The Americans with Disabilities Act is 30 years old, the Rehabilitation Act is almost 50 years old, and that law speaks very specifically to the obligation that the federal government has whether they are conducting activities, meaning that the federal government is directly providing disaster services or whether they are funding the services of another entity, and so whether it is the federal government utilizing federal funds or whether it is the use of federal funds by those who are receiving federal financial assistance.

>> Marcie Roth (Guest):
So that could be a state government, that could be a local government, that could be a private entity, any use of federal funds requires non-discrimination, equal access, physical program, equally effective communication access, without exception. There are no waivers to that. So when we find ourselves in a situation where none of these protections are being monitored and enforced, and very clearly the numbers of people who should have had those protections based on their disability, given the fact that there are no waivers to those protections in a disaster as very clearly stated by the Department of Justice, Department of Health and Human Services, Department of Homeland Security, and in a disaster, in a… Yet again, this is in the US.

>> Marcie Roth (Guest):
In a federally declared disaster and in a public health emergency, both, there are obligations that the federal government cannot give away just because they’ve given money to someone else. So once there’s been a federal disaster declared in addition those disability civil rights laws and in addition to the overarching civil rights laws, the Stafford Act, which is the law that directs all emergency and disaster-related federal actions, calls for non-discrimination. So we very clearly are seeing a significant failure in the monitoring and enforcement of these laws. Globally, many countries have their own disability rights, laws.
Marcie Roth (Guest):

And in almost every member state of the United Nations, there has been ratification of the Convention on the Rights of Persons with Disabilities, the CRPF. And those human rights of people with disabilities include in many of the articles that people with disabilities have the human right to be free from institutionalization, to be free from being the very circumstances under which we are seeing people being held in congregate, dangerous settings. Finally, it is of the utmost importance that we move beyond these as disability rights issues, these are disability justice issues.

>> Marcie Roth (Guest):
We need to move beyond the trying to make laws work when it comes to people with disabilities, we need to instead be working for a just world in which people with disabilities don’t have to fight for rights or look to the monitoring and enforcement of laws, but rather that we as disabled people are as worthy of every opportunity as any other human being and that the environment, the world that we live in is no longer one in which we have to try and force our way into systems and laws and programs that were not designed to work for us.

>> Nicholas Love (Host):
Thank you, Marcie. I couldn’t agree more with that statement. We shouldn’t have to fight just to be part of our world and we shouldn’t be ignored simply because there’s a disaster. You’ve talked about what’s happening in other countries, share a little bit more about that. What’s happening in other countries?

>> Marcie Roth (Guest):
Yeah. WID has had the opportunity over the past couple of years to be at more and more tables where Nothing About Us Without Us has actually included WID and our voices as a disability-led global rights organization, an organization that is committed to justice for 1.3 billion people with disabilities. We have been very active in both United Nations initiatives around humanitarian action and persons with disabilities. We are excited to be leading efforts to bring Disabled Persons Organizations, DPOs, Organizations of Persons with Disabilities, they’re sometimes called OPDs, and human rights community together.

>> Marcie Roth (Guest):
One of the things that WID has been very active in the past, not quite a year, in July of 2020, after recognizing there was a very significant gap in the resources made available to disability-led organizations in disasters by humanitarian funders, corporations, foundations, and others, we launched the Global Alliance for Disaster Resource Acceleration and have been working with our corporate and foundation partners and allies to develop systems and processes that match those humanitarian funders directly with disabled persons organizations that have been impacted by disasters to support those organizations to serve the people in their community.

>> Marcie Roth (Guest):
Not from a charity perspective, not from an approach that directs those resources in a way that doesn’t support community leadership or steps in front of community leaders, the Global Alliance for Disaster Resource Acceleration intends to support the leadership of the most impacted people with disability lived experience and the lived experience of that community and giving them the resources that they identify that they need in order for them to serve their community, both disabled people and others who are impacted by disasters. As of this point in the journey, the Global Alliance for Disaster Resource Acceleration, also known as GADRA, has reached folks who are wanting to hear more about what these issues are and how they may get involved.

>> Marcie Roth (Guest):
We’ve reached people in 69 countries, six continents. And as we get closer to the end of our first year, we are very excited about our ability to make those matches and to bring together those humanitarian actors with those local disability-led organizations to make the kind of improvements and to provide a kind of resources and support that do improve outcomes.

>> Nicholas Love (Host):
That’s absolutely wonderful. It’s great what WID is doing to be part of that solution. As we’re closing this down, is there anything specifically, Marcie, that you want to talk about, share that you haven’t shared yet about this topic?

>> Marcie Roth (Guest):
I think the one thing I want to say is there is lots of discussion underway about building back better after COVID. I would like to suggest that rather than building back better, we need to be building forward better. What we were doing didn’t work. Anybody who’s not sure about that probably hasn’t been paying very close attention. If we really want to be better, we need to be building forward, we need to be building in ways in which disabled people are… Our knowledge, our lived experience, and particularly the lived experience of those of us who have been most significantly impacted needs to be what guides us to build forward better. And we at WID are learning and growing in our ability to center our work in ways that really do yield that kind of building for the future.

>> Nicholas Love (Host):
Thank you, Marcie. This has been a very interesting and sobering discussion. I really appreciate it. Thank you for your time, your leadership, your commitment to the 1.3 billion people globally with disabilities. Thank you for everybody who’s tuned in for the debut episode of What’s Up WID. We’re excited to have you join us for our next episode in two weeks. In the words of one of our founders, Ed Roberts, “We need to get out there and change the old attitudes,” so, as Marcie said, we can build forward better. Thank you.

>> Marcie Roth (Guest):
Thank you very much, Nicholas. Really appreciative of your partnership. Let’s lead on together, make some good trouble.

>> Nicholas Love (Host):
Yes, yes.

Banner with text: COVID Blog: Intensifying medical hazards for people with disabilities. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint.

COVID Blogs: Intensifying Medical Hazards for Persons with Disabilities

by Abha Khetarpal

The COVID-19 pandemic has disconcerted everyone on this planet. Varied scales of interventions, strategies and manoeuvres are being initiated and tried in alignment with the evolving situation. But worldwide, a community that is facing the brunt of this public health crisis is the disability community. People with disabilities, more than one billion people all over the world, are feeling all the more marginalized and isolated. Their plight is even worse in low income and underdeveloped countries where healthcare access is a real challenge for them.

Persons with disabilities are in many cases more susceptible to coronavirus infection, but systemic discrimination against people with disabilities remains interspersed, from testing to treatment.

Having a disability doesn’t necessarily put someone at a greater risk of getting the infection, but in certain disabilities or chronic conditions, the contagion may prove perilous. Those who are undergoing post-polio syndrome may show drastic changes in lung function and are more prone to pneumonia. In musculardystrophy, progressive weakness of respiratory muscles can result in varying degrees of breathing difficulty. Respiratory issues after spinal cord injury (SCI) is more severe in high cervical injuries, with low lung volumes and respiratory muscle weakness. People with psychosis are linked with cardiovascular and respiratory diseases. Those who have immune system disorders like Multiple Sclerosis, Ankylosing Spondylitis, HIV/AIDS, Lupus, and Sickle Cell Anaemia are at a greater risk of critical illness if they get infected with COVID-19, because the virus attacks the immune system. Epilepsy, being a neurological condition, is also included in a list of conditions that may increase the risk of serious COVID-19 infection. Health alerts, advisories, and hygiene measures are not accessible to all.

As a person with disability with weak lungs due to post polio syndrome, I have my own fears. With increase in number of cases and threat of community spread, demand for medical supplies and ventilators is increasing, and in case of rationing of supplies or treatment, I could be on the losing side of a doctor’s life-or-death decision.

In countries like India, lack of testing, inaccessible testing centres, inaccessible pharmacies, and exorbitant cost of treatment pose a greater threat for people with disabilities. Quarantine facilities present many of the same concerns, in addition to high exposure to other people, presenting reinfection risks. Moreover, persons with disabilities in India are not covered by healthcare insurance, leaving them with no option but reduced or limited access to healthcare services.

Exposure to healthcare barriers has accentuated their vulnerability to infection and complications, putting people with disabilities in a catch-22 situation. Apart from the distress caused by the contagion, secondary health conditions of disabled people are being totally neglected. The greater the degree of inaccessibility, the more that additional health conditions are exacerbated.

“I am more prone to produce ear wax and normally have to visit a healthcare facility to get it removed. This time I could not visit my hospital due to the lockdown. My personal attendant tried to remove it at home with cotton buds but because of spasticity of my muscles, the wax was pushed deeper inside and created a blockage. Now I have developed hearing loss and the pain is increasing every day. At present, the hospitals are restricting visitors amid the pandemic. She is neither able to visit the hospital nor do I have any access to doorstep medical services”, says Meenu Mani Arora. She is a resident of National Capital Territory of India, and is a woman with cerebral palsy. She uses a power wheelchair and needs assistance in everyday tasks. Inability to get medical help even for a minor procedure has lead to her hearing loss and severe ear infection.

Necessary physical therapies and occupational therapies are not available during lockdowns, as these are not included in essential services. As for my personal experience, in the absence of physical therapy I feel greater muscle stiffness and lack of blood circulation in my limbs.

Persons with blood disorders and Thalassemia patients have faced an acute shortage of blood in the blood banks across the country as blood donation drives have been called off due to lockdowns and red zone areas.

From these examples, we can imagine the level of suffering and challenges faced by hundreds of thousands of persons with disabilities due to non-availability of adequate medical facilities.

Controlling contagious disease requires immediate access to care, and a minimum of red tape and affordability barriers. Article 25 of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) clearly mandates the State parties to recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without any discrimination.

The key learning from COVID-19 is the significance of a strong public health service. We need a more sustainable and accountable health system that serves us all.

Links to documents referenced:

Report: 1 billion people with disabilities globally

Human rights expert, Catalina Devandas

ILAE: Epilepsy & COVID-19

Abha Khetarpal, an Indian woman, sitting in her power chair and smiling. She is wearing a beautiful orange tunic and deep red pants.About the author

Abha Khetarpal is a Counselor, writer, motivational speaker, teacher, and activist with polio from New Delhi, India. You can find more of her writing at Point of View, Sexuality and Disability , Feminism India, Medium, and Youth Ki Awaaz.

Social Media profiles:

Abha Khetarpal’s Facebook

Abha Khetarpal’s Twitter: @Khetarpalabha

Abha Khetarpal’s LinkedIn 

Would you like to write a blog post about your COVID-19 experiences as a person with a disability or a disability-led organization? Submit a blog pitch via this form.

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Mint green text on deep blue background, reads: National Council on Disability COVID-19 letter to HHS Office for Civil Rights

National Council on Disability COVID-19 letter to HHS Office for Civil Rights

March 18, 2020

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201

Dear Mr. Severino:

On behalf of the National Council on Disability (NCD), I write on a matter of urgency regarding non-discriminatory access to life-saving medical care for people with disabilities who contract COVID-19. Due to the concerns detailed in this letter regarding the predicted impact of COVID-19 on people with existing medical conditions coupled with predicted rationing of life-saving care, NCD requests that the Office for Civil Rights (OCR) quickly issue a notice to physicians and hospitals specifying the applicability of non-discrimination requirements of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act in making treatment decisions. When OCR talks, the medical community listens, and OCR has a window of opportunity now, before physicians become overwhelmed with COVID-19 patients, to provide necessary information to the medical community about the provision of non-discriminatory care.

Current projections show that the need for intensive medical care for victims of COVID-19 will far exceed the resources of the US healthcare system, and medical professionals are already predicting the certainty that emergency and intensive care will have to be rationed. The lack of resources to treat the population who will contract COVID-19 creates a deadly outlook for people with disabilities.  This is not hyperbole – the people most susceptible to COVID-19 have medical conditions, e.g., weakened immune systems, heart disease, diabetes – exactly the people who will be most impacted by emergency or intensive care rationing. Physicians will have to make decisions on who will get life-saving care, and who will not.

Unfortunately, as OCR knows, people with chronic illnesses and other disabilities have been  left behind, denied resources to survive, and as a result, have suffered great losses of life because of lack of emergency preparation that respects every life, and by outright discrimination by medical practitioners who, through ignorance of the law or due to the belief that people with disabilities are less valuable, and therefore less deserving of medical care, than those who are not. Such prejudice has fed into the belief that people with disabilities, especially the most weak and vulnerable, should be put out of their misery. NCD opposes these views and any medical actions that implicitly and explicitly disregard the dignity of the lives of people with disabilities. These beliefs have always been dangerous – but COVID-19 raises NCD’s concerns to an unprecedented level.

OCR is aware of the historic and persistent discrimination against people with disabilities in healthcare. We documented this issue in our recent reports on bioethics and disability, explaining that the lives of persons with disabilities continue to be devalued in the medical profession due to pervasive negative biases and inaccurate assumptions. The belief that people with disabilities have a lesser quality of life and are less valuable to society, has led to deadly consequences – physicians choosing to provide medically scarce resources to non-disabled or healthier people – a violation of human rights, civil rights and a reinforcement of the belief that people with disabilities are lesser-than and less deserving of life itself.[1] Indeed, recent articles regarding the likely response to COVID-19 published by major media outlets are already predicting – unapologetically – that the lack of capacity of the US healthcare system is going to result in rationing of life-saving care for people with chronic illnesses and pre-existing disabilities.[2] Such discourse  has deep historical foundations that has led to discrimination and access to healthcare, including life-saving care, for people disabilities throughout the nation’s history. Once again, society, including physicians, is already accepting the conclusion that this group will be denied the right to life due to a lack of resources. Once again, it is a forgone conclusion that people with disabilities are the most expendable group. Once again, as in previous natural disasters and medical crises, people with disabilities are being told to prepare to die.

OCR has recognized the long-standing discrimination against people with disabilities, taking action to address discrimination on a case by case basis, but the world has changed – we are experiencing a quickly progressing medical crisis which will disproportionately impact people with disabilities on a broad scale. OCR should rapidly head off what could be yet another time in US history when people with disabilities are left to die because medical decisions remain infused with disability bias or because physicians are not aware of their responsibilities under the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act. More evidence of the need for immediate OCR action is found in a cursory review of State protocols for standards of medical care for times of crisis – like a pandemic – that show that people with existing disabilities will be, if the plans remain the same, discriminated against in the provision of COVID-19 care.[3]

Because this historic pandemic disproportionately threatens the lives of people with disabilities, NCD strongly urges OCR to immediately issue a notice to the nation’s medical providers of their obligations for non-discriminatory medical care under the ADA, the Rehabilitation Act, and the Affordable Care Act. The notice should include a statement on the historic and deep-seated biases and stereotypes about people with disabilities that have resulted in eugenics and lack of life-saving care, ask physicians to be mindful of this when making medical treatment decisions, and make clear that, even in an environment where health care resources are limited, the civil rights of people with disabilities cannot be suspended or limited.

Thank you for your work to ensure access to medical care for all people and your efforts to address disability discrimination in health care. OCR’s efforts have improved the lives of people with disabilities and your leadership is valued and appreciated.

If you wish to discuss this with me directly I would be delighted to do that at your convenience. However, if a member of your team would like to discuss this with a member of my team please have them contact Lisa Grubb, Executive Director and CEO at, Joan Durocher, General Counsel and Director of Policy at, and  Ana Torres-Davis, Senior Attorney-Advisor at


Neil Romano

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End the Atrocities at Border Detention Facilities

The World Institute on Disability (WID) joins with organizations and individuals from across the country calling for an end to the atrocities being committed at south Texas detention facilities, more accurately called concentration camps or, at minimum, internment camps as addressed in the July report of the Office of the Inspector General from the US Department of Homeland Security. The degree of inhumanity on display is frightening and devastating.

We respectfully request that the Commission immediately conduct a comprehensive in loco visit to the United States and Mexico to consider actions and policies by both States that are having dramatic negative impacts on the human rights of migrants, particularly asylum-seeking Central Americans who transit through Mexico to reach the United States. We ask that the visit be followed by a report that considers the full extent of human rights violations experienced by migrants in Mexico and the United States. We further request that, after this visit, the Commission engage in ongoing, robust monitoring of the treatment of migrants in the region. This monitoring should include hearings before the Commission during its sessions, additional visits to the region—including the southern border of Mexico and Central America—, development of standards relating to the treatment of migrants “safe third country” and prompt consideration of precautionary measures requests and individual complaints.

WID believes that the mistreatment of asylum-seekers at the border is related to a broader cultural decay that has taken root in US society.

The Nonprofit Quarterly states, “We could cite many examples. The revealing of sexist and racist posts by customs officials on Facebook is one obvious example. We also recall that it was less than two years ago when Nazis openly marched in the streets in Charlottesville.”

And, where in all this inhumane process is the inclusion of people with disabilities in receiving much-needed services and/or medical care? When over 20% of the world’s population has a disability, people being held forcibly at our southern border are disproportionally more likely to have a disability or to acquire a disabling condition as a result of their treatment placing them in much need of disability-related services and justice.

WID joins our “civil society partners in knowing we must declare racial superiority as antithetical” to our common humanity and that our leadership supports racial, disability and economic justice in our organizations, our communities and in society as a whole.

WID demands that immigrants with disabilities be given rights granted under the Americans with Disabilities Act (ADA), be evaluated for their access needs and receive effective and timely service.

Comments on this statement may be directed to Anita S. Aaron, Executive Director/CEO, World Institute on Disability,

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A futuristic robot thinking, surrounded by math equations


Artificial Intelligence (AI) or artificial narrow intelligence (ANI), artificial general intelligence (AGI), artificial super intelligence (ASI) is a critical issue for people with disabilities and it will only grow in its impact. The World Institute on Disability (WID) is aware that AI has already brought many remarkable tools to disability access and inclusion; what has already been achieved illuminates the promise that AI can facilitate more accessible content for people with disabilities.

For example, software is now learning how to recognize and respond to images, sounds, and linguistic expressions, which have opened up new opportunities for people with many disabilities. When the data sets used are designed for full inclusion, tools like those outlined below will positively change the landscape for people with disabilities:

  • For individuals who are deaf or have hearing loss, auto-captioning with AI.
  • For people who are unable to drive, autonomous cars built with Universal Design principles.
  • For people who are blind or have low vision, facial recognition and image recognition to support interaction with the environment.
  • For people with cognitive disabilities, language use to facilitate comprehension.
  • For job seekers with disabilities, with an unemployment rate of more than twice their non-disabled peers, outcomes can change with the development of accessible and intelligent AI solutions which will support job seekers and employees in developing their professional skills, improve workplace culture and expand inclusive hiring.

The concerns of WID, many corporations and public and private sector organizations focus on the critical need for AI standards for privacy, ethics and bias so that full inclusion of persons with disabilities in the evolution of AI occurs. Many of us foresee compounded risks of AI use unless there is commitment to and prioritization of privacy, ethics and bias.  For example:

  • Models learning from biased data may reproduce and continue historical biases;
  • Training data may under represent outlier populations, which often include people with disabilities, and therefore thwart or deny full inclusion;
  • Building inclusive data sets will prove essential for developing effective solutions, but also hold challenges such as requiring people to waive privacy rights;
  • Data collection, machine learning training protocols and programming may not include representation from individuals with disabilities or professionals in the field with the appropriate knowledge to plan for full inclusion; and,
  • Safety, security, bias and accessibility may be a lower priority than speed.

So, while AI is a great opportunity, it is also a great threat to full inclusion for people with disabilities.  Most researchers, accessibility experts, and disability rights organizations agree that building inclusive data sets is one of the greatest challenges for researchers and that AI accessibility should be a base level requirement for AI standards.

WID also recommends that persons with expertise in disability culture and accessibility be engaged early in the AI standards development, as well as those with expertise in recognizing and addressing implicit bias and those who can set guidance for developing inclusive data sets.  Inclusion of those with appropriate expertise will go far to achieve full inclusion of persons with disabilities in future data sets.

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WID Supports the Transformation to Competitive Employment Act

Statement from Anita Shafer Aaron, WID Executive Director/CEO

Feb 01, 2019, Berkeley, CA

On January 31, Rep. Bobby Scott, Sen. Bob Casey, and Rep. Cathy McMorris Rodgers introduced the Transformation to Competitive Employment Act, which provides states, service providers, sub-minimum wage certificate holders, and other agencies with the resources to help workers with disabilities transition into competitive, integrated employment. This legislation is designed to strengthen and enhance the disability employment service delivery systems throughout states, while sub-minimum wages- currently allowed under Section 14(c) of the Fair Labor Standards Act-are to be phased out over a six-year period.

The World Institute on Disability (WID) supports this legislation. We are strongly committed to competitive, integrated employment in mainstream environments for people with disabilities and further that they receive fair and equitable wages for their work.

The employment rate for people with disabilities has been flat for over forty years (hovering around 33%) and many of those who are employed are in sub-minimum wage jobs. It is time to promote legislation that intends to make people with disabilities an equal and included part of the American labor pool.

WID’s mission in communities and nations worldwide is to eliminate barriers to full social integration and increase employment, economic security, and health care for persons with disabilities. WID’s signature program-WID E3-addresses the need for integrated, competitive employment options for people with disabilities.

Employment & Economic Empowerment

The Labor Force Participation Rate for the general public is 77%. For people with disabilities, that rate has been hovering around 33% for the last 40+ years. This is in spite of 40+ years of numerous employment initiatives, laws, and programs created to promote people with disabilities entering the workforce. The question is: what’s missing?

The American labor pool-which includes captains of industry, business owners, employees, and prospective job seekers-needs a “first-step” educational effort designed to improve both the competitive employment expectations and knowledge of people with disabilities. WID E3 is such an effort.

WID E3 offers online resources and technical assistance designed to improve competitive employment outcomes for both youth and adults with disabilities. WID E3 fills the gap between where people might be and where other programs usually start. It is basic training, and when implemented, it’s a bridge.

WID E3 logo-a white Globe and E3 in white letters

The Employment Empowerment module creates a new disability employment perspective and teaches fundamental competitive employment skills. This instruction builds self-confidence and the knowledge necessary to become a competitive job applicant and employee who happens to have a disability.

The Economic Empowerment module shares new asset development and financial planning strategies, including the book EQUITY: Asset Building Strategies for People with Disabilities, A Guide to Financial Empowerment, developed by WID’s internal financial specialists. This section of WID E3 also offers a comprehensive guide for ABLE accounts to help people with disabilities navigate the ABLE program and plan for the future.

The Benefits Empowerment module offers disability benefits planning, training, and resources, including state-specific Disability Benefits 101 (DB101) online tools. Understanding the impact on federal and state benefits allows for accurate, informed decision-making about employment.

The goals of the Transformation to Competitive Employment Act can be achieved with the Employment and Economic Empowerment programs WID has developed, and we are confident these tools will assist the workforce as a whole in becoming an inclusive, integrated space for employees with disabilities.

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HLAA Convention 2018

WID staff member, Josephine Schallehn, attended the 2018 Hearing Loss Association of America (HLAA) convention. The following are her highlights of the event.

This year, I had the opportunity to attend the annual Hearing Loss Association of America (HLAA) convention in Minneapolis, MN, which offers myriad educational workshops on hearing loss, in addition to showcasing the latest technology and services for people with hearing loss. And needless to say, all presentations were real-time captioned, and the presentation rooms were looped, so attendees could listen to the workshops using the T-coil setting on their hearing aids or cochlear implants. (Learn more about loops here.)

A man speaks to the audience, captions onscreen to his right, an ASL interpreter woman to his left
The research symposium, “Listening in Noise,” with Andrew Oxenham, M.D. moderating and presenting | Photo by WID

One of the highlights of the convention was attending the research symposium, which focused on current and future approaches to one of the most vexing and frustrating issues that people with hearing loss encounter: how to listen and understand speech in noisy environments, a challenge that is also often referred to as the “cocktail noise problem.” Five experts from various fields represented on current research that may improve the circuitry used in hearing aids and cochlear implants to reduce/cancel noise. While the presentations were extremely informative and valuable and made excellent use of combining auditory and visual materials, they were nevertheless quite scientific. And the total length of the symposium was three hours.

Luckily, HLAA hosted an excellent one-hour webinar in August that succinctly recapped the crucial points presenters had made and how their research and findings may impact future development of hearing aids and cochlear implants. The consumer-friendly webinar can be replayed at any time, and it even includes a version of one of my favorite short videos shown during the symposium, i.e., a dancing outer hair cell.  The link to the webinar also allows for downloading the PDF used during the webinar.

Three people stand onstage and hold an award
Barbara Kelly of HLAA (center) with the rep from Galapro to her left and Kyle Wright from The Shubert Organization to her right | Photo by HLAA

“Radical Hospitality: Technology Solutions for Audience Inclusivity” was the other highlight and a total surprise at that because if The Shubert Organization and Galapro hadn’t been one of the awardees honored during the opening session of the convention, I wouldn’t have found out about how the app Galapro was developed. And I also wouldn’t have changed my workshop selection for Saturday morning and enjoyed a very informative and funny presentation given by Kyle Wright, Director of Digital Projects at The Shubert Organization.

The Shubert Organization, which owns the majority of theaters on Broadway, uses the Galapro to make live theater and opera performances accessible to everyone.  Theatergoers can download Galapro’s app to their own mobile devices and access subtitles in multiple languages, audio descriptions, closed captioning, and amplification during the performance. I haven’t been to a live performance in decades because, as a hard-of-hearing individual, not being able to follow a live performance is a major concern for me. However, Galapro promises to make live performances accessible to all. Most theaters and live performance venues likely have not heard about Galapro, and here is an excellent advocacy opportunity to let them know that the app exists by pointing them to The Shubert Organization and Kyle Wright if they are interested in finding out what is involved in bringing this cost-effective, mobile, and simple solution to their venues.

A crowded room with several presentation screens, an ASL interpreter, and captioning on the screens
One of the workshops | Photo by WID

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Job Announcement: Projects Coordinator

Note: This position has been filled. Thank you for your interest.


The World Institute on Disability (WID) is an internationally recognized nonprofit public policy center. WID’s mission, in communities and nations worldwide, is to eliminate barriers to full social integration and increase employment, economic security, and health care for persons with disabilities. WID creates innovative programs and tools; conducts research, public education, training, and advocacy campaigns; and provides technical assistance.

Currently WID operates with a staff of 10 employees, a variety of interns and volunteers, and numerous partners and collaborators; with corporate headquarters located at the Ed Roberts Campus in Berkeley, California. Since its founding in 1983, WID has earned a reputation for high-quality research and public education on a wide range of issues. The Board of Directors and staff, over half of whom are people with disabilities, are respected national leaders in the disability rights field as well as in industry, government, and social services. This enables WID to bring a cross-disability perspective to the policy arena. Information on WID’s programs can be found at


The Projects Coordinator position directly supports the Director of Operations and the daily operations of the agency by responding to information and referral requests, assisting in WID front office/reception area related duties and providing reasonable accommodation upon request to staff with disabilities. Additionally, this position will be trained to be a researcher to proctor and work on WIDs disability usability testing program. This position assists in special event planning, including event logistics, registration, and donor acknowledgements. This position assists in the development and distribution of website, print, video and social media communication collateral. In addition, the Projects Coordinator will be assigned to various contract/grant project work that includes research and service initiatives.


40 hours per week


  • Experience using MS Office Suite, dropbox, Gmail and the Internet
  • Professional writing and oral communication skills
  • Experience using office equipment and phones
  • Friendly, conscientious, organized, detail oriented, punctual
  • Works well independently, takes initiative
  • Quick learner, ability to problem solve
  • Ability to travel for project related assignments 


  • Experience creating PowerPoint documents and visual presentations of complex data
  • Experience using Internet sites to efficiently arrange, purchase and track multiple travel itineraries
  • Experience proofreading, formatting and mailing newsletter articles using email campaign software such as MailChimp
  • Experience with online survey software (such as Survey Gizmo) and data analysis
  • Experience with content management systems, WordPress experience preferable
  • Video production experience preferred
  • Experience with event planning and marketing
  • Knowledge of and/or personal experience with Independent Living history and philosophy
  • Experience performing personal assistance services to people with disabilities


Director of Operations


Non-Exempt, full-time, benefits


$40,000.00 annual salary


Send Resume, Cover letter and References to: World Institute on Disability

EMAIL: (WID acknowledges receipt of applications by email only)

Application Deadline: June 29, 2018 at 5:00 p.m. PDT

Proposed Start Date: Mid-July


  • Address reasonable accommodation requests for the application/interview process to
  • WID promotes a scent/chemical free environment. To support this effort, WID asks that all applicants refrain from wearing scented products while in its office.


WID cannot cover the cost of travel or relocation, but encourages all interested applicants to apply.

The World Institute on Disability is an equal opportunity employer with a commitment to diversity. Individuals will not be discriminated against regardless of race, ethnicity, religion (creed), national origin, age, sexual orientation, gender identity, gender expression, disability or veteran status, and other personal characteristics.

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Several open books, piled on top of each other with pencils resting inside

Empowering People with Disabilities to Achieve their Financial Goals with TD Bank

The topic of financial empowerment has increasingly influenced economic discourse in recent years, as a growing number of Americans experience financial insecurity. One particular group of Americans, however, receives nominal attention when it comes to financial empowerment and these are individuals with disabilities.

Research shows that providing people of all abilities and backgrounds with the financial knowledge, tools, access and resources they need to make better financial decisions is not only a social good, it’s also economically expedient, increasing labor participation, while reducing costly government benefits.

In their ground-breaking work, Financial Literacy and Economic Outcomes: Evidence and Policy Implications, Mitchell and Lusardi suggest that nearly one-third of wealth inequality can be explained by the financial-knowledge gap. According to the authors, this gap could increase as consumers confront ever-more sophisticated financial products and services.

Given that around 56.7 million people — 19 percent of the population – have a disability, according to the 2010 census; nearly 16 million Americans with a disability age 25 or older have at least some college education; and over two million have annual incomes over $50,000 (more here), providing financial education and access to people with disabilities is vital to facilitating a healthier, more inclusive economy.

Illuminating a history of invisibility

People with disabilities have faced economic exclusion throughout history, largely owing to discriminatory attitudes and policies. And 28 years after the passage of the Americans with Disabilities Act, individuals with disabilities continue to battle against rampant societal and institutionalized bias.

Frequently stereotyped as unproductive and/or costly to accommodate, individuals with disabilities have suffered higher rates of unemployment along with lower levels of income and savings.

A 2015 survey from the Financial Industry Regulatory Authority’s Investor Education Foundation shows that people with disabilities reported lower scores on a financial literacy test than their non-disabled counterparts (44% vs. 53% average) and had lower self-perceived levels of financial knowledge (70% vs. 81%). People with disabilities are also more than twice as likely to find it “very difficult” to cover expenses and bills (23% vs. 9%), and twice as likely to be unbanked (12% vs. 6%), according to leading research.

Exacerbating the equity gap, many government disability benefit programs cap savings at $2,000, a clear disincentive for individuals with disabilities to become financially self-sufficient.

Addressing this inequity demands a radical shift in public perception along with educational tools and opportunities that empower individuals with disabilities to lead more independent and productive lives.

The power of progress

Thanks to growing awareness around the economic advantages of financial empowerment, the Achieving a Better Life Experience (ABLE) Act is one of a handful of progressive policies that is enabling individuals with disabilities to save money for the first time in history, without jeopardizing their Federal benefits.  Governmental agencies, nonprofits and purpose-driven banks (including TD Bank, Bank of America, Citi and others) have begun introducing programs and services to better serve current and future customers with disabilities.

In fact, TD Bank recently launched an Adaptive Financial Education program that offers a variety of on-site seminars along with interactive tools, tutorials and games that enable “individuals with diverse abilities” and their caregivers to navigate their financial lives more independently and successfully. This program teaches the fundamentals of banking to a segment of people that has been woefully underserved.

As a direct consequence of these new policies and programs, individuals with disabilities are able to work more and save more, eliminate overdraft fees, and improve their credit scores. They are purchasing more homes, establishing college savings plans for themselves and their children, and leading more fulfilling lives.

Given this trend, I can’t wait to see the 2020 census results.

Of this I am sure: When we, as a country, financially empower people with disabilities, we create a more vibrant and inclusive economy for all.

Written by Thomas Foley, J.D., Managing Director of the World Institute on Disability; published on the WID website April 16, 2018.

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